Sometimes you go through things that seem huge at the time, like a mysterious glowing cloud devouring your entire community. While they’re happening, they feel like the only thing that matters and you can hardly imagine that there’s a world out there that might have anything else going on. And then the glow cloud moves on. And you move on. And the event is behind you…” ~Welcome to the Night Vale
Heather was diagnosed when she was 24 years old. Now 41, she shares her Journey and what steps she’s taken to spread awareness about this disease.
Heather’s Journey: My name is Heather Marie Kobza. I was diagnosed with Endometriosis at the age of 24. I’m 41 years old and live in Kentucky with my husband and two chihuahuas.
I’ve suffered with Endometriosis half of my life. I’ve had 5 surgeries and all were unsuccessful. I did 2 Lupron injections 8 years ago for the Endometriosis in my bowels. After the Lupron treatments my stomach completely stopped emptying and I now have a gastric pacemaker. I’m 1 in 4,000 people in the United States with a gastric pacemaker.
MariaElisa am was diagnosed with Endometriosis this year at the age of 25 after a 10-year struggle for answers.
MariaElisa’s Journey: I got my first 10cm cyst at age 12, delayed removing it because I was “too young”. Once they decided to do emergency laparoscopy it ruptured and had a torsion which damaged my right ovary and Fallopian tube.
Got my first period at 14, all seemed normal until I turned 16. Severe, heavy painful periods. They started to become more irregular and i was left in debilitating pain on my legs and lower back. Doctor after doctor kept telling me being a girl with these pains isn’t anything to be worried about because my sonograms and paps were “normal” except my enlarged left ovary which I’ve known about for years.
I wanted to take a moment to tell you that although times are uncertain and stressful right now, please remember to take care of yourself in all ways possible. And please be kind and courteous to others.
Happy Friday! I hope you’re doing well. And if you’re not, I want you to know that you CAN get through this. We’re all here for you.
Today’s quote hit me in The Feels. It’s you. And I. And all of us.
“Heroes didn’t leap tall buildings or stop bullets with an outstretched hand; they didn’t wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving. Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else’s. And maybe that one act could lead someone to rescue you right back.”
MARCH! Endometriosis Awareness Month! My Facebook newsfeed has exploded with EndoWarriors posting amazing things every day and I love it!
So, today’s quote IS US!
“Drop upon drop collected will make a river. Rivers upon rivers collected will make a sea.” ~Sa’di (1213-1292)
We are numerous. A mighty force. We stand together. WE FIGHT TOGETHER!
May you have a wonderful weekend! And if you need me, I’m here.
Blogs I updated this week:
Bladder & Endometriosis: Added a January 2020 study from ACTA Scientific Womens Health about a a 46-year-old woman who had complaints of painful, long, and heavy periods. She also had difficulty urinating, peed frequently, felt pain when she peed, and sometimes had blood in her urine. Turns out she had Endometriosis inside her bladder.
Endometriosis & the Bowel: Added a January 2019 study from Paripex of a woman who had a mass of Endometriosis inside of her sigmoid colon…that actually prevented a full colonoscopy from being performed.
Endometriosis & the Lungs: Added a January 2020 study from the Thai Journal of Obstetrics & Gynaecology of a 49-year-old woman with a history of spontaneous pneumothorax. Surgery finally confirmed the presence of Endo lesions in her right lung and her diaphragm, but she had no other evidence of pelvic Endo, nor other symptoms of Endometriosis. Five years after her surgeries, she was still symptom-free.
February. Man. What a weird month for pain and symptoms…
Pain started around February 5th and continued nearly the entire month. I also took a staggering amount of Ibuprofen, none of which was related to my Endo symptoms. I did need several Naproxen and two separate halves of Tramadol, thought.
And although I spotted for several days, I technically didn’t have my period. The spotting took place far off of what would have been my normal period. And when I brought it up to my gyno, they didn’t count it as a period, either. You know, the “first day of your last period” question?
At least the pain continued to only be located at lower left, lower right, and mirrored areas of my lower back. We’ll continue to monitor it and see what my surgeon finds in May.
Would you like to see the play-by-play daily journal?
And the super silver lining? I still have zero pain when I poo! I mean, I still need to figure out what I’m doing to upset my guts on the regular poop/diarrhea scale, but…that’s a work in progress. I know cheese is a big culprit, and likely booze. Meh. I’m not over-indulging in either…but I still feel like they’re both big players in my poo-game.